They’re the tech-age version of donor jars at the diner: crowdfunding websites that aim to link ailing people with strangers willing to help pay for medical treatment. But new research suggests duped patients sometimes crowdfund to pay for bogus stem-cell treatments.

A study published Tuesday in the Journal of the American Medical Association focused on for-profit clinics that use direct-to-consumer advertising for costly unproven stem-cell treatments for conditions including chronic lung disease, Parkinson’s disease, multiple sclerosis and arthritis. Treatments are often marketed as cures or with a promise for vastly improved health.

Crowdfunding campaigns for stem-cell treatments may be duping patients seeking relief and leaving donors out of pocket.

These campaigns, which encourage strangers to help fund medical procedures, fail to emphasize risks and often exaggerate efficacy, according to a new study co-authored by Jeremy Snyder, a bio-ethicist professor at Simon Fraser University.

“It’s a viral spread of misinformation,” he said. “They’re hyping the effectiveness of these treatments with no mention of risks whatsoever. Then all of it is being shared on social media, more than 100,000 times.”

But all those treatments are old, particularly Burzynski’s. Stem cells are new; they’re hip; they’re happening; they’re now. There’s no doubt that they theoretically have enormous potential as a treatment for disease There’s just one problem. The number of conditions that they’ve been shown to be effective in treating is thus far quite small, which means that the indications for which stem cell clinics claim they are effective are nearly all, scientifically speaking, bogus indications, and many stem cell companies have a highly dubious history. One in particular, Stemedica, has a history of selling water woo.

So let’s take a look at the study itself, published in JAMA as a research letter, which is a short format used for focused studies that don’t have enough findings to require a full research article to report. The study is by Jeremy Snyder and Valerie Crooks at Simon Fraser University and Leigh Turner at the University of Minnesota. They looked at 351 US-based businesses engaged in direct-to-consumer marketing of stem cell treatments of one form or another. They searced from August 2017 to December 2017 for mentions of these businesses on the crowdfunding platforms GoFundMe and YouCaring, which, they note, are the two largest charitable crowdfunding platforms. An external search was used to verifying the results and find additional campaigns. Then, for each campaign the authors extracted information on the amount of funding requested and pledged, the number of donors, and the number of shares on Twitter and Facebook. They also analyzed the statements about the risks and efficacy of these treatments as perceived by the patients and families behind the campaigns. Efficacy statements were classified thusly:

As of December 3, 2017, our search identified 408 campaigns (GoFundMe = 358; YouCaring = 50) seeking donations for stem cell interventions advertised by 50 individual businesses. These campaigns requested $7,439,308 and received pledges for $1 450 011 from 13 050 donors. The campaigns were shared 111,044 times on social media. Two campaigns were duplicated across platforms but shared separately on social media. Of the 408 campaigns, 178 (43.6%) made statements that were definitive or certain about the intervention’s efficacy, 124 (30.4%) made statements optimistic or hopeful about efficacy, 63 (15.4%) made statements of both kinds, and 43 (10.5%) did not make efficacy claims. All mentions of risks (n = 36) claimed the intervention had low/no risks compared with alternative treatments.

This jibes with what I’ve observed in general about crowdfunding campaigns to pay for alternative medicine treatments for cancer. The authors note that they probably underestimate the number of crowdfunding campaigns to pay for stem cell quackery, and that’s almost certainly true. However GoFundMe and YouCaring are the two biggest crowdfunding websites; so I’m pretty sure they probably found the vast majority of these campaigns.

The authors also note:

Crowdfunding campaigns for unproven stem cell–based interventions underemphasize risks and exaggerate the efficacy of these interventions. These findings suggest that medical crowdfunding campaigns convey potentially misleading messages about stem cell–based interventions. These claims may be especially powerful when embedded within compelling personal narratives. The situation parallels that of DTC marketing of unproven stem cell–based interventions, which has been shown to make hyperbolic claims about efficacy and minimize risks associated with their use.3-5

Although many publications examine DTC marketing by stem cell clinics, there is little research examining how individuals make sense of and act on such advertising claims. These findings suggest that individuals interested in purchasing unproven stem cell interventions may reflect DTC marketing messages in crowdfunding campaigns, thus potentially helping propagate them.

Although GoFundMe does not publish its total number of health-related campaigns, YouCaring reported (https://www.youcaring.com/fundraisers/medical-expenses) 62,739 campaigns on February 26, 2018; thus, campaigns for stem cell therapies represent a small percentage of their overall campaigns.

No doubt this is true, but it would be interesting to look at crowdfunding for more than just stem cell treatments. The difficulty would be, of course, in differentiating crowdfunding for medical expenses for legitimate, science-based treatments, which is all too common in the US given that medical bills are a major cause of bankruptcies here, from quackery. It’s not always obvious, because, in my experience, it’s not uncommon for the people running some of these crowdfunding campaigns not to identify the treatment for which they are raising money in sufficient detail to tell if it’s science-based or not. Be that as it may, this study does a service in providing an estimate of the scope of the problem of patients raising money for quack stem cell treatments.

It should also be noted that the very business models of these quack stem cell clinics and alternative medicine cancer clinics has come to depend on crowdfunding. The reason is that they charge large sums of money for their treatments, and the vast majority people just don’t have tens or hundreds of thousands of dollars readily available to pay for their treatments. So in the past their options included draining their bank accounts, maxing out their credit cards, getting loans from family or friends, and, for some of them, even selling their house and other possessions. The rise of crowdfunding for these clinics has made these treatments available to more people, who understandably use their nearly always compelling personal stories to drive donations. Worse, crowdfunding for legitimate medical treatments often falls short and depends on the social media skill and how well the patient’s story is told, which means that the crowdfunding playing field is far from level.

I don’t blame the patients or their families. They’re desperate. I do, however, blame the clinics making false (or, most charitably, highly exaggerated) health claims and the crowdfunding companies that turn a blind eye to the scams people are using their platforms to raise money for. I hope that this study, and perhaps others to follow, will begin the conversation over what responsibility crowdfunding sites have to those who use them not to aid them in being conned.

That would be several thousand dollars (or in some cases more) for each of these fundraising campaigns.

It’s probably unreasonable to expect them to detect every scam that uses their platform, but several thousand dollars ought to at least buy them some due diligence, such as Googling to find out whether any of these clinics have a history of scamming patients.

A few days ago I read an article about some fundraising for a guy with a braintumor, Not for any last treatment, but to record the last album by him and his band. That is some crowdfunding I can agree with.

Crowdfunding sites don’t adhere to their terms of use. Case in point: last year an anti-vaccine physician in Arizona announced plans for a school for unvaccinated children, with a fund-raising campaign at indiegogo to get it off the ground (https://www.indiegogo.com/projects/eco-project-from-the-drs-wolfson-kids#/). I wrote Indiegogo to inform them this campaign violated their terms of use, which prohibits campaigns that “cause harm to people”. They thanked me for my complaint and did nothing (on the bright side the campaign only raised $175 of its $1,000,000 goal).

Orac, I know this isn’t tied to this article, but anti-Gardasil quackery is going strong in my family, they talk about “300 South American girls” who developed Guillain–Barré and other problems shortly after taking the vaccine, I think they cited an article from something called LifeSiteNews. I want to steer them in the right direction, but they just call me a crazy brainwashed Pharma shill it I do.

Ah, far-right Catholic Theocrats, noted at Snopes for fabrications. They share the usual theocratic beliefs that (a) Gardasil stops God from punishing sex, and (b) it’s therefore OK to make stuff up about it.

Desperate people are easy to exploit, and those suffering from major and/or fatal conditions are even more susceptible. And praiseworthy sympathy for those in desperate straits can easily be channeled into the pockets of them frauds who exploit them.

Fortunately, our libertarian friends tell us that the magic of the free market(TM) will eventually put these quacks out of business without the stifling influence of government regulation or oversight, right? Whoops, Maybe not.

[…] Then there’s the fundraising. So. Much. Fundraising. The fundraising happens on Facebook. It happens on GoFundMe. It happens in the media, particularly in tabloids like the Daily Mail, which frequently post glowing stories about children like Nguyen that help their families to raise still more money. Just like the Burzynski model, Clínica 0-19’s business model relies on the existence of these crowdfunding sites. Without them, few families could manage to fundraise so prodigiously. Crowdfunding sites like GoFundMe and YouCaring are a testament to the inherent generosity and goodness of many people, of their desire to help their fellow human beings, but there’s a dark side. That dark side is that the existence of such fundraising platforms makes the proliferation of clinics like Clínica 0-19 possible and far more profitable given that before only the rich could afford such clinics. It also makes the existence of quack stem cell clinics so much more lucrative, given the prodigious amounts of money that can be raised, as shown in a recent study. […]

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